Development of a Hydroxyurea Decision Aid for Parents of Children With Sickle Cell Anemia

Abstract

National evidence-based guidelines recommend offering hydroxyurea to patients with sickle cell anemia 9 months of age and older using shared decision making, but offer no strategies to aid implementation. We developed a hydroxyurea multicomponent decision aid via a needs assessment, clinic observations, and iterative feedback to address parent decision needs and promote a discussion between clinicians and parents. A total of 75 parents and 28 clinicians participated across all phases. The decision aid was rated as useful. Hydroxyurea knowledge improved and decisional conflict decreased supporting the potential for use to facilitate shared decision making in pediatric sickle cell anemia.

Comparative Effectiveness of a Web-Based Patient Decision Aid for Therapeutic Options for Sickle Cell Disease: Randomized Controlled Trial

“…Further studies are therefore required to determine how physician involvement in incorporating a patient decision aid in discussions with patients may contribute to shared decision making in real world settings. Crosby et al have described the use of patient decision aids for HU in SCD patients that included coaching by clinicians [71]. Further study is needed to develop and test coaching methods for use of the patient decision aid to determine if they will improve both its utilization and utility.…”

Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial

“…The ENGAGE HU trial compares the existing ASH clinician pocket guide with the H-SDM toolkit, which is a caregiver-centered, technology-enhanced decision support toolkit to help clinicians implement SDM for hydroxyurea [ 11 ]. We designed the H-SDM toolkit components to increase the likelihood that caregivers and health care providers would make a change in their behaviors (ie, engage with one another to make a decision about hydroxyurea).…”

“…These interventions should foster fidelity. Our pilot work indicates that clinicians currently using the toolkit decision aids find them beneficial and recommend them to others [ 11 ]. Ultimately, we hope that our study findings will have a substantial impact on improving health outcomes and decreasing health care costs in pediatric SCA and other chronic conditions.…”

“…The social cognitive theory posits that behavior change occurs when an individual is motivated, feels confident in his or her ability to perform the new behavior (self-efficacy), and observes that the behavior is successfully performed and reinforced by others (observational learning and reinforcement). The development of the H-SDM toolkit is described in detail elsewhere [ 11 ]. Briefly, our research team collaborated with clinicians, educators, community-based organizations, and patients with SCA and their caregivers to identify barriers related to decision making regarding hydroxyurea.…”

“…We developed the hydroxyurea SDM toolkit (H-SDM toolkit), which is a caregiver-centered, technology-enhanced decision support tool. We designed the H-SDM toolkit to strengthen SDM, reduce caregiver uncertainty, allay potential fears, increase the offering of hydroxyurea, and ultimately improve hydroxyurea uptake [ 10 , 11 ]. In this paper, we present a protocol for a multisite randomized controlled trial (RCT; ENGAGE HU).…”